Thursday, May 21, 2015

Wednesday, May 20, 2015

Abuse… A Doctors Get Out Of Jail Card | dystonia and me

"clings to the idea of abuse being the root of all my problems. This is despite having letters from my neurologist and my cognitive behavioral therapist telling him that my past has nothing to do with my Dystonia. "
* * *
Doctors love to blame your physical problems on psychiatric causes, because it absolves them of needing to do more than refer you to a psychiatrist.

Monday, May 18, 2015

Why Disability Capitol Action Day?

Follow on Facebook: Disability Capitol Action Day
Legislators are used to seeing disabled people in ones and twos and threes, each on their own awareness day, talking about their own disease.  Therefore, since they never see a lot of people at once, they don't realize how big a voting bloc the disabled community is, and don't think they need to care about our issues because "it only affects a few people".
Come to #DCAD2015 -- Wednesday, May 20, 2015 -- so that the legislators see thousands of disabled people, along with their families, friends, and caregivers, and understand how many of us these issues really affect.  We'll be on the front lawn of the California State Capitol, where they will be sure to notice that there are oodles of people who care about disability issues, whether that's curb cuts or IHSS/SSDI/SSI payments or expanded Medicaid.
This year, we're celebrating 25 years of ADA.  Help us make a lot of noise to dissuade those who think it's time to get rid of it.  Yes, there are legislators who think all the problems have been solved and there's no longer a need for ADA.
Admission is free, and there are plenty of resource booths where you can pick up information, free pens, free pads, free fridge magnets, maybe even a free tote bag.  If you register early next year, you'll get a free box lunch; all of the available ones for this year have been spoken for, but there are plenty of places nearby to buy lunch (I recommend the cafe in the Secretary of State building 2 blocks away at 11th & O -- your taxes subsidize inexpensive food for state workers, so why not take advantage of it yourself? You will need photo ID to get into the building.)  Alternately, between 10 and 1, there's a farmers market 3 blocks away at 10th & J, where you can buy fresh fruit and veggies to snack on.
If you'd like, you can go into the Capitol to meet with legislators to share your concerns with them.  Or just come for the party and the entertainment.

Friday, May 15, 2015

ME/CFS Disability Scale

For those curious, this is the ME/CFS disability scale:

100: No symptoms with exercise. Normal overall activity. Able to work or do
house/home work full time with no difficulty.

90: No symptoms at rest. Mild symptoms with physical activity. Normal
overall activity level. Able to work full time without difficulty.

80: Mild symptoms at rest. Symptoms worsened by exertion. Minimal activity
restriction needed for activities requiring exertion only. Able to work
full time with difficulty in jobs requiring exertion.

70: Mild symptoms at rest. Some daily activity limitation clearly noted.
Overall functioning close to 90% of expected except for activities requiring
exertion. Able to work/do housework full time with difficulty. Needs to
rest in day.

60: Mild to moderate symptoms at rest. Daily activity limitation clearly
noted. Overall functioning 70% to 90%. Unable to work full time in jobs
requiring physical labor (including just standing), but able to work full time
in light activity (sitting) if hours are flexible.

50: Moderate symptoms at rest. Moderate to severe symptoms with exercise or
activity; overall activity level reduced to 70% of expected. Unable to
perform strenuous duties, but able to perform light duty or deskwork 4 - 5
hours a day, but requires rest periods. Has to rest/sleep 1-2 hours daily.

40: Moderate symptoms at rest. Moderate to severe symptoms with exercise or
activity. Overall activity level reduced to 50-70% of expected. Able to go
out once or twice a week. Unable to perform strenuous duties. Able to work
sitting down at home 3-4 hours a day, but requires rest periods.

30: Moderate to severe symptoms at rest. Severe symptoms with any exercise.
Overall activity level reduced to 50% of expected. Usually confined to
house. Unable to perform any strenuous tasks. Able to perform deskwork 2-3
hours a day, but requires rest periods.

20: Moderate to severe symptoms at rest. Unable to perform strenuous
activity. Overall activity 30-50% of expected. Unable to leave house except
rarely. Confined to bed most of day. Unable to concentrate for more than 1 hour
a day.

10: Severe symptoms at rest. Bed ridden the majority of the time. No travel
outside of the house. Marked cognitive symptoms preventing concentration.

0: Severe symptoms on a continuous basis. Bed ridden constantly, unable to
care for self.

Scientists Discover Robust Evidence That Chronic Fatigue Syndrome Is Biological


These immune signatures represent the first robust physical evidence that ME/CFS is a biological illness as opposed to a psychological disorder, and the first evidence that the disease has distinct stages. Results appear online in the new American Association for the Advancement of Science journal, Science Advances.

With funding to support studies of immune and infectious mechanisms of disease from the Chronic Fatigue Initiative of the Hutchins Family Foundation, the researchers used immunoassay testing methods to determine the levels of 51 immune biomarkers in blood plasma samples collected through two multicenter studies that represented a total of 298 ME/CFS patients and 348 healthy controls. They found specific patterns in patients who had the disease three years or less that were not present in controls or in patients who had the disease for more than three years. 

Tuesday, May 12, 2015

#May12BlogBomb event

I suppose I should slip in just under the wire on this one.
Here we are, more than 30 years after the twin epidemics and how far have we gotten?
No treatment.
No cure.
Too many people still thinking it's all in our heads and we should just exercise our way back to health. Or eat a raw food diet.  Or only eat cooked food to kill the germs in raw food.  Or only eat certain foods.  Or try talk therapy to get rid of a virus.
Because we get 1/2 of 1% of the per-patient funding that cancer gets.  You can't find answers you're not looking for.  Cancer has a 95% cure rate; CFS has a cure rate of zero.  Zip, zilch, nada, not one patient has ever been cured.  Yet they want us to feel sorry for someone who's going to take a couple months off work (with automatic Disability benefits), puke a couple days after chemo, and then go back to work full-time, because that person has "[shudder] Cancer". 
Let me tell you, it really rattled the cage of a friend undergoing chemo when she described how she felt the next day (and by Day 3 she was feeling well again) and I told her that I feel that way every day.  Every. Single. Day. For. Years.  I wish I could tell myself "endure this for 48 hours, and then you'll feel fine for a couple weeks until your next treatment."  I feel that awful without seeing a light at the end of the tunnel, without being able to tell myself that I'm suffering in order to be cured.  I'm just suffering because I have no other options other than suicide.  And a lot of my fellow patients have taken that option because they can't stand the suffering without any promise of hope for a cure.
I was not joking earlier today when I suggested that the government should pay us reparations, just as they did to the Japanese citizens who were placed in camps during WWII.  By the time I retire, I'm going to have lost more than a million dollars in income, for the sole reason that my government would rather see me suffer endlessly than put money into research funding to get me well enough to return to full-time work.  But I'm not holding my breath for the government to admit that the real problem is not that patients are "too lazy to work" but the government's refusal to fund proper research.

Saturday, May 9, 2015

Calling all young artists! Ken Friedman is holding an art contest

Calling all young artists!

Ken Friedman is holding an art contest for the cover of the Pediatric and Adolescent ME/CFS Primer. The new Primer will assist pediatricians and primary care physicians in the diagnosis and management of ME/CFS in children and young adults.

Young artists who are currently diagnosed with, or recovered from, ME/CFS, and are aged 17 and younger, are invited to submit their artwork by June 30, 2016.

For more information or an application form, email